My husband was diagnosed in mid 50s. Over the last twelve years everything has fallen to me. I’m still working, just turned 65. Love my job, make a good income which is needed to pay for care.
He is volatile, sundowns, is completely negative, has pushed everyone away from us and I’m exhausted.
The constant stress and negativity is draining me and it is becoming harder and harder to cope. Everyday is a screaming match.
He refuses to cooperate on anything, including eating.
I feel like im being robbed of my life, having fun, enjoying myself and really struggle with loneliness.
Anyone have experience with building a life outside of the caregiving that helps meet your personal need for companionship, good discussion, some happiness and not still managing to care for your loved one.
No she is gone and I am wanting to start a life at 71. I think after all is done with settling her estate I will look into preplanned funerals.
I do become concerned about my mom developing dimentia because she has Parkinson’s and I know some Parkinson’s patients do suffer with dementia as well.
hungry all the time, and wanted to eat something. So I often had to cook her something at odd hours. I had to quit my job that I was at for 25 years. I lost all my friends, and had no social life. My point is that eventually, you will have to get him care somewhere, In the form of an assisted living facility or nursing home.
Or you may have to hire a caretaker to come in and take care of him. Because trying to do it all yourself will age you quickly, and may end your life prematurely. I know from experience.
You say a facility would bankrupt you. Are you sure? Have you done all the research and all the adding up?
Bear in mind that not all facilities are equal, and that your husband's dementia is not typical. Availability is patchy but there are specialist providers of dementia care who might transform your and your husband's quality of life. It's got to be worth a second look, hasn't it?
Have you consider putting him in a daycare program and then having an aid for the evenings? Obviously, something has to give or he may out live you.
I hope you find a way that makes you feel like life is worth living for you and not just to care for your husband. It is hard to be so young and have lost so much. He is blessed to have you and you are pretty awesome for caring enough to be there for him. Hugs!
He also sundowns, can be very abusive verbally and can be threatening at times. He also has begun to wander, therefore, it isn't safe to leave him alone. His family has only helped when it was a have to situation. They seldom visit nor do friends. He is physically able but not mentally. It seems like practically everything is gone. He still eats good, maybe too good, as I find him getting into anything and everything during the nighttime hours. It is so difficult dealing with all of this.
I too feel like I have no life. I do have my family that I can talk to which helps. Just having someone to talk out frustrations helps.
I'm looking into applying for Medicaid. I've found very little in home help and practically no help from his rather large family. At this point, I feel like I have to try to get him in a nursing home as I feel he may out last me especially if I have to go on like I have been caring for him. I
don't want to do this either but I don't even want to think of spending the rest of my life like it is.
Hopefully I'm doing the right thing for both of us. I've prayed about it and if its Gods will it will work out. If it doesn't I'll continue to look to him for guidance and strength to carry on. I pray the same for you and hope you have family that you can talk with. For me, my sister is especially my best listener and we talk by phone most every day.
I also pray for a cure for Alzheimer's. So many are faced with this. It is sad that more isn't being done not just to prolong but to prevent it!
Our much berated Congress has legislated and developed a wonderful program in Medicaid Title XIX.
XIX was develped for DD population with birth or childhood conditions. Waivers allow those programs to be extended to other populations such as elderly disabled.
I am respecting our government.
Any failure of Medicaid services is the fault of the state administrations.
I had carried premium insurance for many years.
The policy included Long Term Care but it was useless with no diagnosis, no treatment
Christy was not in a facility so there was no billable code.
Under private insurance, nothing was done to seek diagnosis or treatment.
The Medicaid program forces providers to aggressively seek diagnosis and treatments.
Congress wants vulnerable citizens to have the 24/7 care that is needed to keep them out of institutions and in their own homes..
Christy does not comprehend the world.
I hand feed her cut-up foods and hydrate her with a turkey baster continuously all day.
The most difficult is occupying her.
TV means nothing. She paces most of the day.
Christy now receives the Congress intended 24/7 attendant care. to keep her home. That is provided by family members working through an agency.
Basically, for Christy's level of care, bvFTD, a facility would cost $300 per day as published to DHS. 24 hour attendant wage is $288 per day.
The intimate care at a home setting saves by fewer health issues, hospitalizations. and allows for the Congress intended quality of life.
Quality of life is a Medicaid mandate that tends to be skirted.
We never had use for substances, drugs, alcohol, tobacco so cannabis was not a consideration, but it has been our salvation since 2013.
It calms the chaos in her brain and stops the seizures immediately.
No more aggression.
It has taken several years to learn the right product and dose, but was are satisfied with the consistent result.